Grieving the Diagnosis: The Long and Winding Road

  • Jim was thrilled to have reached senior partner status in the large law firm where he’d worked for the last ten years. This was a time of celebration for Jim and his wife of thirty years, Marie. Their grown son and his family would be proud.

    There was only one sticky detail that spoiled Jim’s joy. Last week, on the way to work, Jim had gotten lost. He had made a turn at a detour and forgotten he’d made that turn. He just kept on driving, until he was several miles passed his destination. Finally, his head cleared, and he was able to find his way back. This incident would have been disturbing under any circumstances, but a month ago he may have chalked it up to distractions at work. However, he’d done a similar thing a couple of weeks before. And, lately, he would sometimes – just for a moment – forget what an object he’d just pick up was used for. It was eerie.
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    Jim had hidden this worry from Marie, at first, but when she teased him about putting his keys in the cupboard, the facade cracked. He told her of his last few weeks. Marie hadn’t known there was a pattern, and simply thought he was too preoccupied. When Jim explained the other episodes to Marie, they knew they may be dealing with something scary, but kept assuring each other that it was probably the new medication he was taking for high blood pressure. They made an appointment with Jim’s doctor.

    Jim’s doctor couldn’t connect the behavior with the new medication. He gave Jim a thorough physical, with good results. The doctor gently told Jim and Marie that he wanted to refer Jim to a neurologist for further testing. The appointment was made. Jim was tested for neurological function. Then he was referred to a psychiatrist for cognitive testing. The diagnosis was made. Jim had Alzheimer’s disease and it was ravaging his brain, even as they sat listening to the doctor explain what was wrong.

    Jim and Marie stared at the doctor; then each other; back at the doctor. No. This wasn’t possible! Jim was brilliant. He was not yet 60. They numbly took the brochures and referrals the doctor gave them, and held hands as they walked out the door. “He doesn’t know what he’s talking about,” Jim sputtered angrily. Marie agreed, saying that even though both the neurologist and psychiatrist agreed on the diagnosis, mistakes are made. This had to be one of them.

    Jim and Marie were traveling the knotted road of grief. Denial, anger, bargaining, depression and eventually acceptance are the steps. These stages are classic reactions to the unimaginable – to circumstances we can’t control. The death of a loved one; financial ruin; a crippling accident – any heart-breaking part of human existence. If we think about it, we realize that we also go through these stages for more minor happenings, such as missing an event because of some unavoidable glitch. But, it’s a matter of depth – the feelings mirror the seriousness of the event. In the case of Jim and Marie, the event – the diagnosis of Alzheimer’s disease – is one of the most frightening events most of us can imagine. Anyone with some knowledge of dementia knows that Jim will soon be a very changed man. The question is, how soon?

  • The stages of grief – denial, anger, bargaining, depression and eventual acceptance – are not always in that order. They stampede through us, often grouped together and bound so tightly that it’s hard to separate them. They hide in corners, only to pop out when we think we’ve chased them away. They trade places and taunt us. Denial, anger, bargaining, depression and acceptance. Anger, denial, bargaining, acceptance and depression. The times we feel acceptance aren’t times of “oh, it’s okay.” They are times where we just accept what is happening as the truth. We understand that it is real. We can find acceptance, but then, around the corner, denial is once again lurking.
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    By the time Jim and Marie arrived home, they had worked their way toward anger. Anger at the doctor who delivered the message. Anger at the world for allowing this disease to exist. Anger at God for this horrible blow, during what should have been a time of celebration. Bargaining with God soon took over for Jim, while Marie was wrestling with depression over the loss of their future together. Soon, they were fighting - something they rarely did. It made no sense. They were fighting over how Jim could have prevented this disease. Fortunately, that was short-lived. They knew it was the emotion of the moment. Marie cried that she was sorry. Jim said he knew. It was fear. Fear of the unknown – and the known.

    Accepting the truth in one’s heart takes time. So the first reactions, the first emotions are an overwhelming storm. Jim remembered a neighbor, a once sweet, gentle man, who, in late stage Alzheimer’s, had begun hitting his wife. That was when the neighbor went to a nursing facility. Marie remembered her grandmother, and how her grandmother would wander the house and wail like an animal in pain. Marie vaguely remembered the words “senile dementia” being whispered by her parents. Images of Jim roaming the house howling found a home in her brain. They both thought of their son and his family. Would their grandson’s only memories of Jim be like those Marie has of her grandmother?

    They had a night of crying and little sleep. By morning, perhaps out of exhaustion, they were once again looking for loopholes. Denying the truth they had been told. They were bargaining with the future, the past, with God as they knew him. They talked of calling their son. But Jim and Marie needed time. They took another day to absorb what they had been told.

    They needed time to accept enough of the truth to move on and seek information. To ask about medications that can slow the progress. They need time to research, plan and then reach out to the community they helped build. And they would need to help their son, daughter-in-law and grandson through the hurricane of emotions the young family would have to navigate. Grieving is complicated process, and the family would need to support each other as they found their way.
Published On: September 14, 2006